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Richard M.Merson, PhD, CCC-SLP
Kathleen Roeder, MA, CCC-SLP

Speech-Language Pathology Department William Beaumont Hospital, Royal Oak, Michigan

Dr. Richard Merson is Coordinator of Research, Speech and Language Pathology, William Beaumont Hospital and a Member of MPF's Professional Advisory Board. Kathleen Roeder is Supervisor, Acute Care Speech Pathology and William Beaumont Hospital.

  1. Persistent coughing after swallow

  2. Regular choking on liquids

  3. Difficulty maintaining your weight

  4. Increasing eating time

  5. Worsening tongue control

  6. Chronic slow or delayed food passage

  7. Significant loss of appetite

Swallowing problems in Parkinsonism are not unusual and rarely unmanageable. The typical muscle impairments of individuals with Parkinson's Disease ( i.e. weakness, slowness, delayed-initiation, freezing, or tremor) may cause significant difficulties in controlling food or liquids in the mouth, adequately chewing or masticating , quickly passing the food to the throat, , protecting the windpipe (i.e trachea) from food and liquid choking, and finally smoothly and firmly receiving the food into the esophagus for passage to the stomach. All of these actions require the coordinated work of more than two dozen muscle groups (i.e. lips, tongue, cheeks, palate, throat, voice box, and food tube) that must be performed hundreds of times each day in 4-8 seconds.

Breakdowns in this chewing-forming-pushing process can cause choking when the food particles or liquids pass into the windpipe (i.e aspiration). Further, individuals may find that eating is too time consuming, requires too much effort, or may frighten them when the food does not pass easily into the food tube. These problems may lead to weight loss or reduced calorie intake that is so critical in maintaining energy and general muscular activity. We cannot take swallowing difficulties for granted. Some swallowing difficulties may cause liquid , saliva or food to enter the lungs on a recurring basis and leave you vulnerable to a lung infection. If these symptoms are severe, unresponsive to treatment and insufficient calories are achieved daily then a medical procedure to place a tube inside the stomach (i.e. PEG tube: Percutaneous Endoscopic Gastrostomy) may be considered.

Dysphagia: Swallowing Disorders

In medical terminology a disorder of swallowing is identified as a "dys-phagia" (Latin for difficulty swallowing). Dysphagia symptoms may occur anywhere from the lips to the stomach. If swallowing difficulties occur in the esophagus (food tube) and down through the entryway into the stomach then an Esophagram (i.e. an xray to examine the swallow) may be ordered by your physician and a gastroenterologist ( G.I. physician specializing in the digestive system) may be consulted. Sometimes the G.I. specialist will perform a procedure to expand or open the esophagus by a procedure known as esophageal insufflation to improve the passage of food . The physician may also prescribe medications to assist in some esophageal swallowing disorders. If however, the swallowing difficulties occur in holding the food in the mouth, chewing the food, or safely passing the food to the esophagus then a speech-language pathologist may be consulted to identify the dysphagia and recommend some exercises or alter the diet to manage the problems.

Different types and severities of dysphagia may be present in patients after surgery, in association with chronic debilitating illness, from loss of dentition, loss of salivation or other conditions. Symptoms associated with aging, stroke, over-medication, traumatic brain injury, myasthenia gravis, muscular dystrophy, multiple sclerosis and Parkinson's disease can cause dysphagia symptoms. Individuals with chronic illness must develop a good daily nutritional program that provides adequate intake of calories, critical vitamin, protein and carbohydrates, and sufficient hydration (liquids). Patients should work closely with their physicians, nutritional experts and caregivers to maintain a daily healthy diet.

The Dysphagia Team

(Primary Care Physician, Gastroenterologist, Neurologist, Radiologist, Speech Pathologist and the Spouse/Caregiver)

The speech pathologist is often the rehabilitation professional who will assist you in maintaining good oral muscular control and prevent food from entering the windpipe through treatment techniques. If necessary a specialized xray procedure called a Modified Barium Swallow fluoroscopy will be completed. Your physician is always the first person to contact when you are experiencing difficulty swallowing. If you need some assistance or further treatment of how to improve your swallowing a consultation with a speech-language pathologist affiliated with a hospital, an outpatient rehabilitation program, a homecare service or a skilled nursing facility is available with a medical referral.

The Modified Barium Swallow Procedure is the most common medical procedure jointly conducted by a speech-language pathologist specializing in swallowing disorders and a physician-radiologist to evaluate dysphagia. This xray procedure is not a complicated or lengthy diagnostic procedure. The patient sits comfortably erect in a special chair. The speech-language pathologist prepares and feeds the patient liquids, applesauce or crackers mixed with a Barium material for brief videofluouroscopic filming of the mouth, pharyngeal and esophageal swallowing events. This usually requires 15-20 minutes. The physician identifies any anatomic or physiologic disorders as he observes the swallowing tasks and the speech-language pathologist identifies any swallowing difficulties that can be treated. There are many other medical procedures that your physician may choose to diagnose your dysphagia and recommend treatment. They may include a Radiologic Imaging, Barium Esophagram, Manometry, Bolus Scintigraphy, Flexible Endoscopic Evaluation, or Ultrasound. Your physician will decide, based on examination, what dysphagia medical procedure(s) is most appropriate.

Swallowing Rehabilitation

Speech-Language pathologists usually provide the behavioral treatment for individuals with dysphagia. Treatment may focus on one or more of the following dysphagia symptoms: (1) improving or compensating for the individual's difficulty in chewing or managing food in the mouth; (2) preventing food or liquid from entering the windpipe ( i.e. the trachea); (3) reducing delays in transit of food by adjusting the textures, timing or preparation of food to be swallowed; (4) managing the schedule of eating to reduce fatigue and muscle weakness. The speech-language pathologist or physician may recommend a consultation with a dietitian to train caregivers to provide instruction or food preparations for some patients.

When the Dysphagia Team decides that an individual's diet should be changed to make swallowing healthier and safer, they may suggest a PUREED DIET or a MECHANICAL SOFT DIET. Usually, when swallowing liquids is difficult with persistent cough on thin liquids ( i.e. water leaking into the windpipe), a PUREED DIET with THICKENED LIQUIDS may be recommended. When liquid swallowing is safe but muscular weakness persists (slow eating, food gets stuck, food is poorly chewed), then a MECHANICAL SOFT DIET may be recommended. Some individuals have difficulty chewing, but can manage thin liquids. Special adjustments can be made to suit individual needs.

Dietary Suggestions for Dysphagia

Tips & Precautions

  • Don't eat when fatigued

  • Sit erect

  • Emphasize soft , moist foods

  • Don't talk while eating

  • Take smaller bites

Example of a PUREED DIET

  • *Thicken liquids to honey consistency

  • Cooked cereals, whipped- potatoes & squash

  • Strained fruits, applesauce, mashed banana

  • Strained meat, soft scrambled egg

  • Strained & whipped vegetables Thickening material available at drugstores include Thick-it, Nutra Thickt, ThickenUp

Example of a MECHANICAL SOFT DIET

  • Thickened liquids if necessary

  • Cooked or ready-to-eat cereal, soft bread

  • Well cooked vegetables

  • Cut-up canned fruit without tough membrane

  • Tender cuts of meat extra sauce or gravy

  • Eggs, cheese, macaroni, moist casserole

Summary

Swallowing problems or Dysphagia are not uncommon in patients with Parkinson disease symptoms. You should consult your primary care physician if you have persistent difficulty choking on liquids or eating comfortably on a regular basis. Most of the swallowing problems can be managed by a few individualized exercises, swallowing techniques or modifications in your diet. Good health is dependent on a well rounded diet, the use of plenty of liquids and an enjoyable eating experience.

Website References

American Speech-Language-Hearing Association, Dysphagia Research. http://search.asha.org (Conduct a search for the keyword Dysphagia.)

Dysphagia Resource Center: www.dysphagia.com

National Institute on Deafness and other Communication Disorders [NIDCD]: http://www.nidcd.nih.gov/health/voice/Pages/dysph.aspx

 

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Deborah M. Orloff, MPH, BSN, RN, Chief Executive Officer, MPFwith Richard Berchou, Pharm.D., R. Ph., Wayne State University School of Medicine, and Bradley K. Evans, M.D., Northern Michigan Neurology

When we began organizing the Michigan Parkinson Foundation in 1982, a group of volunteers came to our offices at Harper Hospital to help with a mailing. Conversation was lively about medications each person was taking. Even today, after presentations about PD, the most frequent questions center on medication issues. We all know that careful balancing of medications and timing of when to take them can make a great difference in how people with PD feel and function.

The following article contains tips to help you to get the most out of your medication regimen to control Parkinson's disease symptoms, increase your ability to function and achieve the best quality of life possible.

Parkinson's disease is a chronic, progressive neurological disorder that currently cannot be cured. Many medical diseases cannot be cured (diabetes, hypertension, arthritis), but optimum medication management, psychosocial support and healthy living contribute to better outcomes. The objective of treatment is controlling the symptoms with medication. Other actions can be taken to improve functioning, such as exercise, stress management, occupational, physical and speech therapies. Key to quality of life is making sure a medication regimen is organized so that symptoms are controlled.

When does treatment with medications begin for early Parkinson's? What agents should be used first?

When you should start taking medications depends upon you as an individual and how much the symptoms interfere with your lifestyle.

Similar to the treatment of most diseases, the optimal drug therapy for Parkinson's disease is based on many factors and must be individualized. Medications are selected depending upon careful consideration of each person's responses, short and long-term side effects, possible drug interactions, presence of other medical and psychiatric conditions, as well as prescription insurance coverage and cost. If you have a Medicare D plan, whether or not it has a donut hole may make a big difference in the medicine you take. There has always been controversy in terms of when to start medications and which ones should be used initially. Discuss these options with your neurologist.

Does the amount or type of Parkinson medication you take mean your condition is more or less serious than someone else's?

No. Each person has different challenges with Parkinson's disease. Symptoms vary and so do treatments, the amount and types of medications and the individual's response to specific medications.

Tips in taking your medications:

Make sure that your doctor is aware of ALL the medications you take, including over the counter medication, herbals, vitamins, nutritional supplements, or any special dietary requirements. Carry a list of your medicines or the pill bottles themselves to your appointment and a list of questions to ask your doctor.

Ask questions, as given below, about your medications and how to take them - and make notes.

  • What is the name of the medication, the dose and when do you take it (not just how many times a day)?
  • How do you take your medication - with or without food?
  • What can you expect from your medication? What kinds of symptom relief is to be expected and when - in one day, in a week? How long do you wait before you call your doctor to learn if your medication is working as expected? When you start some medications, it may take a while to build up to a "therapeutic dose." You may begin on a low dose and gradually build up to the level that adequately manages your symptoms.
  • What happens if you miss a dose, or forget to take it on time? This greatly depends on the medication so don't guess what to do. If you miss a dose, it is not always good to take twice the amount the next time. Clarify this with your physician.
  • What side effects are usual for each medication? If you have a side effect, what does it feel like? What should you do? When do you call the doctor?
  • What will the side effect look like? Learn the terms used to describe side effects. Sinemet is one medication where "wearing off" may occur over time. At first, there is a beneficial effect (less symptoms of PD) for several hours (therapeutic effect). After a while, the positive effect of medication lasts for a shorter time period and you may become more rigid or have involuntary, abnormal or writhing movements (dyskinesia). This is called "on-off" phenomena. Other side effects may include dystonia (a type of cramping), nausea, vomiting, headaches, hallucinations, or loss of balance. Recording when these side effects occur in relation to when you take your medication will help your physician organize your medication regimen to reduce side effects and increase control.
  • Is there anything you can do to avoid having a side effect, particularly if you are taking several medications for different conditions? How can your Parkinson's medications be coordinated with your other medications to maximize your treatment of each health condition?

Are there medicines you need to avoid when taking Parkinson's medications?

A variety of medications, most of which are compatible with other prescription and non-prescription drugs, are used to treat Parkinson's disease. However, there are a few drugs that can worsen PD symptoms and interfere with PD medications' actions, including some used for hallucinations, for lowering high blood pressure, and for nausea and vomiting. Sometimes problems will occur only with high doses. This should be discussed with your physician. It is important to realize there may be other possible medications you can take. Most medication interactions are reversible, so discuss the topic with your doctor. Check over-the-counter medications for cautions regarding their use when you have PD. Your pharmacist is also a good resource to consult.

The Michigan Parkinson Foundation's Professional Advisory Board has recently revised a Medication Interaction Card which you may wish to order to keep with you for reference. Contact MPF to obtain an updated card.

If you are experiencing problems, such as symptoms not relieved by the medication, or fluctuating symptoms, how can you effectively communicate these to your physician?

It is not unusual to experience symptoms at home and not during your appointment with your health care provider. Your physician may not actually see the difficulties you are having. It is a good idea to keep a detailed, written diary for a few days prior to your office visit, or when you are experiencing difficulty. This will provide a timeline for your doctor. Don't rely on your memory.

KEEP A DIARY AND INCLUDE:

  1. What are your symptoms? Describe them in detail. Explain to your health care provider what the symptoms mean to you, how they affect your quality of life and your functioning. Why is it important to reduce the effects of those particular symptoms? What is troublesome to one person is not to the next.
  2. When do your symptoms start? What time and under what circumstances (e.g. after meals, during certain activities)?
  3. How long do your symptoms last? Does anything relieve them?
  4. When do you take your medications (time, with or without food)?
  5. Are you experiencing any particular stress or anxiety, or are you sick?

Special Notes:

Some people may have difficulty swallowing pills. There are several techniques that can help. Ask your physician or pharmacist what you can do.

Do not abruptly stop your medications without checking with your physician first. Stopping some medicines may result in withdrawal symptoms. If you are to be hospitalized, or undergoing dental or medical procedures, consult your physician about your medications. Do not assume you know what to do.

Note: MPF has a hospital form you can complete before your hospital visit to assist staff in ensuring your treatment regimen is carried out. Call for information.

What are some tips to remember when to take medications on schedule, since timing is very important in managing PD symptoms?

Over time, most people with PD have to take several medications at different times of the day. It is easy to forget when your next dose is. There are several methods to help you to remember to take your medications, such as:

Filling pill containers for each daily dose

Set alarm clock on watch or cell phone

Establish a routine (such as before or after meals)

What are reliable sources of information about the medication I am taking?

Obtain all the information you can about medications that are prescribed. Good sources of information are your physician, pharmacist, or health provider. Additional information can be obtained from websites:

www.drugs.com (costs, drug interactions)

www.medscape.com (free registration, drug interactions, patient information sheets)

www.Rxlist.com (patient comments)

www.webMD.com (patient comments)

What can I do if I have difficulty paying for my medications?

Speak with your neurologist. Some pharmaceutical companies have medication assistance programs. Your physician may be able to modify the medication regimen to make it more affordable.

The following websites provide access to various sources of low cost or free medication, including Pharmaceutical Assistance Programs:

www.needymeds.com (information about qualifying for assistance programs)

www.Pparx.org (Partnership for Prescription Assistance)

Rxassist.org (Patient Assistance Program Center)

The Michigan Parkinson Foundation has a small fund to assist people with financing their medications. In order to be eligible, consideration is given both to financial information and costs for healthcare for the entire family. Contact the MPF office at 248-433-1011 or 800-852-9781.

How should I dispose of unused or expired medications?

In order to keep people safer, protect young people from the harmful misuse of prescription drugs, understand the needs of seniors, and the environmental implications related to improper disposal of medication (e.g. flushing them down the sink or toilet), Operation Medicine Cabinet™ was launched in 2009 at the Oakland County Sheriff's Office, partnering with Home Instead Senior Care. There are now several prescription drop-off locations in Oakland County. Check for similar programs in your county. For information, visit www.operationmedicinecabinetmi.com.

Caution: There are many advertisements for unproven therapies.

Often, people end up paying lots of money for treatments that do not work. Discuss these therapies with your neurologist first. Also, check the company out with the Better Business Bureau, or www.quackwatch.com.

 

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By Amer G. Aboukasm

Although the daytime clinical manifestation of Parkinson's disease have been well recognized for almost two centuries, the nocturnal (nighttime) symptoms, which occur in as many as 75% of patients and the associated sleep disorders were not studied until the 1960s. A variety of psychological and physiological processes can lead to disruption of the normal rhythm of the sleep-wake cycle in patients with Parkinsonism. First, the degenerative process in Parkinson's disease affects the neurophysiological and neurochemical systems responsible for sleep organization, thus results in disruption of sleep. Second, the motor, respiratory and behavioral phenomena accompanying the disease may produce nocturnal symptoms. Third, the medication used in its treatment may induce new symptoms, such as nightmares or nocturnal movements. All these effects on sleep have implications for treatment planning.

Clinical features:

Insomnia with difficulty falling asleep and remaining asleep are the most common sleep-related complaints. Nocturnal vocalization and daytime dozing are also common. The inability to turn over in bed and to get out of bed to go to the bathroom, are especially bothersome complaints.

Sleep disturbances including daytime sleepiness tend to increase with disease progression. Patients with on-off phenomena and hallucinations are particularly likely to have severe sleep disruption. Depression and dementia, which commonly affect late-stage Parkinson's disease, are usually associated with increased severity of sleep disturbances, including nocturnal hallucinations and vocalization, and sometimes the REM sleep behavior disorder (which consists of violent movements related to the patient acting his/her dreams; this is due to lack of the physiologic paralysis of the skeletal muscles during Rapid Eye Movement stage of sleep).

The Sleep-Wake Organization Disturbances, mostly consist of sleep fragmentation. The time to fall asleep and the number of awakenings tend to increase in proportion to the severity of the parkinsonian symptoms. The proportions of lighter stages of sleep are increased and REM sleep is remarkably reduced.

The Motor Activity during sleep: tremors are generally suppressed, although they may appear during stages 1 and 2 of sleep, with awakenings, body movements or during bursts of rapid eye movements or after an REM period. Simple and complex movements are common during sleep in patients with parkinsonism. These include blinking, blepharospasms (spasms of the eyelids), persistent contraction of the muscles in Non-REM and in REM sleep, vocalization, periodic limb movements (resulting in extension of the big toe, foot or fingers) and REM sleep behavior. Furthermore, REM sleep behavior may appear years before the onset of daytime symptoms of Parkinson's disease or other related degenerative disorders. -Sleep-Related Respiratory Disturbances include irregular breathing due to central apnea from lack of the respiratory drive or obstructive sleep apnea due to upper airway closure.

Diagnostic Evaluation:

Clinical history, examination and sleep studies are used to determine the most important factor in the patient sleep disorder. The description from the bedpartner is essential to determine the presence of movements or awakenings and daytime sleepiness. The medication schedule is important. If dopamnergic drugs medication are not taken in the evening, nocturnal rigidity may contribute to sleep disruption; on the other hand the same drugs taken excessively or late may induce sleep-onset insomnia.

Sleep studies are useful when sleep apnea is suspected based on history of snoring, witnessed respiratory difficulties during sleep, or excessive daytime sleepiness. Sleep studies are helpful in documenting abnormal limbs movements or REM sleep behavior disorder.

Treatment:

The treatment of sleep disturbances in patients with parkinsonism is rarely straightforward because treatment of the disease may impact on or result in sleep disorders. The dual action of the dopaminergic drugs must be kept in mind: low doses of these medications may promote sleep, whereas high evening doses may result in sleep disruption in the first half of the night and improve sleep in the second half of the night. When managing the sleep disturbances of parkinsonism, the physician must balance the effects on sleep of changes in medication dosage with the effects of such changes on daytime parkinsonian symptoms.

Improvement of sleep hygiene in addition to simple measures such as placing a portable commode at the bedside may lead to substantial improvements. Concurrent psychiatric disorders should be addressed. In advanced stages of the disease, the patient's spouse should be advised to sleep in a different bed or room; inadequate rest for the spouse or other caregiver may make the patient's sleep disturbances intolerable leading to institutionalization.

For patient with insomnia without nocturnal hallucinations or vocalizations, a small dose of a dopaminergic drug, such as Sinemet 25/100, at bed time with a second similar dose at 2 or 3 AM if needed may be considered. In that regard, Sinemet CR 50/200 is particularly useful. Unfortunately these drugs may results in new sleep problems including vivid dreams, nightmares and night terrors. These occur in up to 30% of patients especially those with dementia. Small dose of short-acting sleep medication (Ambien, Sonata ), for few days or weeks may help normalize the sleep-wake schedule. Antidepressants with sedating properties such as amitriptyline are frequently helpful for sleep-onset insomnia.

Nocturnal vocalization and REM sleep behavior disorder respond to clonazepam (Klonopin). Nocturnal hallucination may require reduction in the dopminergic drugs dosages or the use of antipsychotic drugs such Seroquel or Clozaril.

The treatment of sleep apnea in parkinson's patients is similar to the treatment of such problems in other patients. In patients with sleep apnea, Continuous Positive Airway Pressure is the most effective treatment. Upper airway surgery may help some patients. For patient's with severe vocal cord dysfunction tracheostomy often is necessary.

Tips for Dealing with Sleep Problems

By Linda Mondoux

  • Sleepiness during the day or frequently waking up during the night are signs that you should evaluate your sleep pattern.

  • It would be helpful if you had a diary to share with the physician. You could include the following items:

    1. When do you go to bed and how long you sleep? Is this a consistent pattern?

    2. How long it typically take you to fall asleep?

    3. Describe any rituals that help you to fall asleep or anything that helps if you are awakened during the night.

    4. Do you take any medications routinely that are for sleeping or that you think keep you awake.

    5. Do you worry about things before you fall asleep or if you wake up during the night?

    6. Do you exercise and, if so, when do you exercise?

    7. Do you eat or drink anything just before you go to bed?

    8. Do you feel rested during the day or are you usually tired feeling all day?

  • There are sleep clinics with specialist who can evaluate your sleep pattern and develop specialized plans for you to achieve more restful nights.

  • Psychological and mental health problems like depression, anxiety and stress are often associated with sleeping difficulty. In many cases, difficulty staying asleep may be the only presenting sign of depression. A physician should be consulted about these issues to help determine the problem and the best treatment

  • Work with your physician and pharmacist to determine if any medications can cause insomnia. Both prescription and over-the-counter medications can have side effect of sleeplessness. Check with your doctor to question if any of the medications that you re taking could be potential culprits.

  • Choose a consistent time to go to bed and to wake up. This is important even if you do not have schedules to follow during the day. Your body recognizes that it is time to go to sleep if you can develop a regular time to go to bed. Your "biological clock" gets set with a regular sleep pattern.

  • Try to avoid thinking about troubling thoughts or trying to solve problems after you lie down to go to sleep. Set aside a time earlier in the night to deal with "heavy thinking."

  • Most people function best with 7 ½ -8 hours of sleep a night. If you go to bed after midnight, it is generally harder to get to sleep, as many people start to feel more awake after midnight.

  • Use the bedroom only for sleeping and sex to minimize the association with other activities that do not equate to sleep.

  • If you try to fall asleep and are unsuccessful after 15-20 minutes, then get up and go into another room and read or relax by listening to soothing music or reading light material. You should, however, not expose yourself to extremely bright light, as that gives a message to your body that you are to wake up. Tranquil music with sounds of nature, such as waterfalls and ocean waves, can aide in falling asleep. Don't watch television or engage in any challenging activity or strenuous exercise.

  • Evaluate your bedding to make sure that is comfortable and make changes as you identify areas for improvement. There are many specially contoured pillows to provide neck support depending on whether you are a "side sleeper" or an "on the back" sleeper. There are also pillows that allow you to have your head more elevated if you have any respiratory distress at night or if you have acid reflux (GERD).

  • Be sure that the bedroom's temperature is comfortable for you. Sometimes people sleep better in a cooler room.

  • Eliminate any noises and lights that might cause distractions. Earplugs that can comfortably mold to the ears are sometimes beneficial. Some people find "white noise" machines or a blowing fan noise to be conducive to sleep.

  • Naps are not recommended during the day. If you do take a nap, take it before 3 PM and don't sleep longer than an hour.

  • Rituals that signal that it is soon time to go to sleep have proven helpful. Sometimes a bath just before going to bed can help you to relax and fall asleep more easily. Some people listen to soothing music or drink decaffeinated tea, such as chamomile tea. Before using any herbal teas, you should check with your physician.

  • Getting outdoors daily to be exposed to natural light can help to establish a circadian rhythm.

  • Coffee, colas, and chocolate have caffeine and this can be a stimulant, causing you to stay awake at night. Smoking before bedtime is also detrimental, as nicotine is a stimulant.

  • Alcohol can cause you to feel sleepy; however, during your sleep it might cause you to have a sleepless night.

  • Strenuous exercise less than 3-4 hours before bedtime can cause you to have difficulty falling asleep; however, yoga or relaxation exercises can aid in falling asleep.

  • When the sun goes down, the pineal gland is stimulated and produces a natural chemical called melatonin. Your body needs melatonin to feel sleepy. Melatonin can be found in oats, rice, ginger, tomatoes, bananas, barley and sweet corn. You can also eat foods that help to stimulate the production of melatonin in your body. Such foods include soy nuts, cottage cheese, chicken, pumpkin, and turkey.

  • Small snacks before bed, particularly foods high in the amino acid tryptophan, such as peanut butter and dairy products, can cause sleepiness and help you to fall asleep.

  • For individuals that have allergies to dust or dust mites, paying attention to decreasing allergens by dusting frequently, using vacuum cleaners with HEPA filters, using air conditioners, and replacing old pillows and carpeting. Pets can also interfere with sleep with their dander, but also with their movements on the bed.

  • There are some herbal scents that can induce relaxation and sleep, such as lavender and vanilla.

 

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Roger L. Albin, MD, Anne B. Young Collegiate Professor of Neurology, University of Michigan Medical School, Past MPF Advisory Board Member

The evaluation and diagnosis of Parkinson's disease (PD) and related conditions is based almost completely on a careful history and physical examination. There are no radiological or laboratory measures that contribute significantly to the evaluation of PD and related disorders. The point of departure for establishing a specific diagnosis is identification of the syndrome of parkinsonism.

A syndrome is a constellation of related symptoms and examination findings that point to dysfunction of a specific organ or part of an organ. Syndromes usually have several causes. In the case of parkinsonism, all the key features stem from impaired production or action of the brain chemical dopamine. Parkinsonism can result from degeneration of dopamine producing nerve cells, blockade of dopamine action by certain types of drugs, or loss of the nerve cells that are the targets of dopamine action.

The key clinical features of parkinsonism are bradykinesia (slow movement), rigidity (an increase in the resistance of an affected body part to passive movement of that body part by an examiner), resting tremor (rhythmic involuntary movements when the affected body part is relaxed), and loss of postural reflexes (impairment of the body's ability to maintain an erect posture when displaced rapidly by an examiner) (Table 1). Discovery of two or more of these findings by a competent examiner indicates an abnormality of dopamine mediated signaling within the brain. If these features are not present, then PD and related disorders are excluded. An important corollary point is that these clinical features and symptoms should exhibit insidious onset and slow worsening. Sudden onset of these features would be very unusual for PD or any related disorder.

Difficulties with diagnosis of PD arise in two specific contexts; (1) initial diagnosis, and (2) individuals thought to have PD whose clinical course is atypical. When an individual is initially found to have parkinsonism, there are 3 major possible explanations.

  • The first is PD itself.

  • The second is drug-induced parkinsonism, a situation in which a prescribed drug impairs the action of dopamine and results in parkinsonism. Many drugs used in psychiatric practice have this side effect. Some drugs used for treatment of nausea can also have this side effect. These side effects do not usually occur after short-term use of these drugs but generally follow weeks to months of administration.

  • The third possible explanation is one of the PD related disorders (see below).

A fourth possibility that should be mentioned is Benign Essential Tremor (ET), even though this disorder does not exhibit parkinsonism. ET is a very common entity among older Americans. It is distinct from parkinsonism in that the tremor is not present at rest but occurs with use of the arms and there is no bradykinesia, rigidity, or loss of postural reflexes. Inexperienced physicians sometimes confuse these entities.

A definite diagnosis of PD is possible only after death with pathologic examination of the brain and detection of characteristic abnormalities. Clinical diagnosis of PD is based on the presence of two or more features of parkinsonism, the exclusion of other causes of parkinsonism (such as drug-induced parkinsonism), and the presence of significant improvement with a dopamine-like drug, either in the form of an L-dopa preparation or a dopamine agonist. PD responds well to treatment with these agents while the other neurologic diseases causing parkinsonism do not. Despite the apparent imprecision of this approach, it is actually very successful and studies comparing clinical diagnosis by expert clinicians with pathological diagnosis have shown clinical diagnosis to be quite accurate.

If these conditions are satisfied, the diagnosis is almost certainly PD. Difficulties occur in diagnosis when one of the other neurologic disorders causing parkinsonism is present.

Table 1: Parkinsonism: The Dopamine Deficiency Syndrome

Bradykinesia
Rigidity
Resting Tremor
Loss of Postural Reflexes

Table 2: Differential Diagnosis of Parkinsonism

Drug Induced
Dopamine Antagonists; Anti-Psychotics, Anti-Emetics
Catecholamine Depleters; Reserpine, Tetrabenazine
False Transmitters; a-Methyl-Tyrosine
Essential Tremor - Not Really a Mimic
Other Neurodegenerations Affecting the Basal Ganglia
Progressive Supranuclear Palsy
Multiple Systems Atrophy
Corticobasal Degeneration
Idiopathic Parkinson's Disease

Table 3: Discordant Features

Atypical Presenting Features
- Lack of Tremor
- Symmetrical Onset
- Early Autonomic Dysfunction
- Early Cognitive Dysfunction
- Unusual Eye Movement Findings on Examination
- Atypical Movement Control Problems of Affected Limbs
Rapid Progression
Lack of Response to Dopamine Replacement

Table 4: PD-Like Syndromes

Progressive Supranuclear Palsy (PSP)
Multiple System Atrophy (MSA)
Corticobasal Degeneration (CBD)
Lewy Body Dementia (LBD, DLB)

 

Clues indicating the symptoms are not PD

The most important clue that another neurologic disorder is present is lack of significant response to a dopaminelike drug. These drugs must, however, be tried at adequate doses and for proper lengths of time. A short trial at a low dose may simply not be adequate to assess response.

Some other clinical features may point away from PD. Most, but not all PD patients, have resting tremor. The PD-like disorders usually lack tremor. PD typically begins on one side of the body where most of the PD-like disorders have symmetric onset (for an important exception, see below). Rapid progression of parkinsonism is another important clue. We expect PD patients (with appropriate treatment) to do well and progress slowly for at least 3-5 years after diagnosis. Finally, each of the PD-like disorders has characteristic features that assist in the diagnosis.

Other Disorders

The four major disorders that can mimic PD are Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), Corticobasal Degeneration (CBD), and Lewy Body Dementia (LBD).

PSP is characterized by certain types of eye movement abnormalities, particularly difficulty with voluntary movements of the eyes in the vertical plane.

MSA is distinguished by difficulties with the autonomic system, the part of the nervous system responsible for maintaining blood pressure and similar functions. MSA patients frequently have difficulties with maintaining an appropriate blood pressure when standing, have problems with control of their bladders, may have sweating changes, and in men, impotence is common.

CBD is a rare disorder which typically presents with asymmetric abnormalities of limb function. There may be a combination of clinical findings suggesting parkinsonism and abnormalities of limb use reflecting dysfunction of the cortex; the so called thinking part of the brain.

LBD is quite common but does not usually present with parkinsonism, but rather with dementia. Dementia is uncommon in patients with early PD but when dementia occurs prior to or approximately coincident with the development of parkinsonism, LBD is the likely diagnosis.

These PD-like disorders are individually rare but their aggregate prevalence is significant. Perhaps as many as 15% of patients presenting to Movement Disorder Clinics for evaluation of parkinsonism turn out to have one of these PD-like disorders. Making a specific diagnosis of one of these disorders is often quite difficult. The characteristic clinical features may not appear until months to years after the emergence of parkinsonism and prolonged clinical follow-up is necessary often to confirm a specific diagnosis. There is no effective primary medical or surgical therapy for any of these disorders. The emphasis is on assistive care with physical therapy, occupational therapy and interventions that palliate some of the symptoms. Making a specific diagnosis as early as possible is important to improve patient and family comprehension, reduce unnecessary medication trials and diagnostic studies, and to focus attention of appropriate assistive interventions.

 

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Dr. Kelvin Chou, MD, Associate Clinical Professor of Neurology, Director, Deep Brain Stimulation Clinic and Co-Director, Movement Disorder Clinic, University of Michigan Medical Center; and Member, MPF Professional Advisory Board. Anonymous Family. Deborah M. Orloff, MPH, BSN, RN, Chief Executive Officer, Michigan Parkinson Foundation.

Over the years, one of the major concerns we at the Michigan Parkinson Foundation continue to hear is the fear people with Parkinson's have regarding hospitalization. A traumatic experience in itself, the inability of those hospitalized to receive Parkinson medications as prescribed makes this experience even more difficult. We have read articles in other newsletters about difficulties encountered and even the need to avoid emergency rooms. Others, on a more positive note, focus on how to handle the hospital situation.

Dr. Kelvin Chou (University of Michigan), and his colleagues wrote an article which was featured in NPF's Parkinson's Report as well as the Messenger, (Fall 2008, pp. 6-8), answering 5 frequent questions about hospitalization. Since then, the Michigan Parkinson Foundation's Professional Advisory Board sanctioned a 4- page form created by the Parkinson's Resources of Oregon and Oregon Health & Sciences University ("Critical Information for Caring for the Parkinson's Patient") which we are encouraging people to complete prior to their hospitalization so they can explain to hospital staff what their needs are. Yet, the problem continues.

The National Parkinson Foundation commissioned neurologists at their Centers of Excellence to review articles and studies relating to the effect of hospitalization on people with PD. Dr. Chou was part of this effort and the results were published in the journal, Parkinsonism and Related Disorders (Aminoff, et. al, Management of the hospitalized patient with Parkinson's disease: Current state of the field and need for guidelines. 2011, pp. 139-145). A White Paper was written, focusing on the need for education of hospital staff about the care of the person with PD while hospitalized.

In this article, we report the success of one family in working with hospital staff to care for the hospitalized person with PD. As the story unfolds, Dr. Chou comments on each aspect, from preparation for the emergency room to what happens during the hospitalization. It is the intent of the Michigan Parkinson Foundation to work towards furthering the knowledge base of health professionals to enable the person with Parkinson's to receive optimal care, regardless of the setting.


Mr. and Mrs. X were very satisfied with their care during a brief hospital stay at a local hospital. It could have turned into a discouraging situation had they not been able to work out a compromise with health professionals with whom they dealt.

Mrs. X has had PD for over 20 years and is, as she puts it, very meticulous about her medication schedule. She needs to maintain a very strict every 3-hour schedule while awake, or else she goes into an "off period" (becomes very slow and rigid) and consequently she has carefully constructed a comprehensive method of insuring that she takes her medication on time.

During the summer, she was treated on an outpatient basis for a bladder infection. Despite treatment, symptoms persisted and were severe enough to result in her having to go to the emergency room. Her husband accompanied her. What is very striking is their preparation to go to the ER. The system she has developed helps her to feel a measure of control over managing her condition which at times can be overwhelming.

    1. Mrs. X has a form on her computer where she enters all of the pertinent information about her medications and conditions that are important. She carries a copy of this in her wallet and also places it in a small "cosmetic bag." At right (next page) is what her record looks like. Note that there are additional instructions at the bottom.

    2. In this cosmetic bag, she also has a 2-day supply of all of her medications, plus one extra dose. Because she needs to take her medications frequently, she uses a pill container that is actually intended to hold a week's supply, but she places one dose in each compartment for the entire day. There is an extra compartment where she places a back-up dose - just in case. Her pill containers are filled every other week, allowing her to have a 2-week supply. Mrs. X carries a 2 day supply with her at all times.

    3. In order for her to ensure she takes her medication on time, she uses a watch with an alarm which she sets to go off every 3 hours. Just in case, she sets it 10 minutes early to allow for a window. In her cosmetic bag, she also has a form that she checks off each time she takes her medications.


Commentary: The preparation of Mrs. X is to be commended. Such preparation is important not only for the emergency room, but for clinic visits as well. Being organized helps the physician focus on the patient and the patient's complaints, rather than spending time figuring out which medications the patient takes. Knowing your medications or having a current list also decreases the likelihood of mistakes.


Once at the ER, her husband explained to the staff that she needed to take her medications on time, showing them her medication system. The staff allowed him to help administer the pills to her. Mrs. X had various tests and it was determined that she needed to be hospitalized for IV therapy treatment.


Commentary: Based on the review of the medical literature, it is clear that patients with PD are admitted more often to hospitals and frequently have longer hospital stays than the general population. However, what is most interesting is that PD symptoms by themselves are not common reasons for hospitalization. In fact, the most common reasons for hospital admission among PD patients are pneumonia or other infections (such as urinary tract infections), elective procedures (such as a knee replacement or hip replacement), cardiac problems (such as heart attacks), gastrointestinal disorders (such as nausea, vomiting and diarrhea), and lightheadedness with standing causing fainting spells, strokes, and changes in thinking and memory. PD is often treated by a neurologist in the clinic, so hospital staff are often unfamiliar with PD symptoms and PD medications. You will be surprised how much more you know about your disease than the people you interact with in the hospital. Be prepared to re-educate the staff as you are transferred from the emergency room to your hospital room.

 

Once admitted to her hospital room, accompanied by her husband, Mrs. X was interviewed by a nurse. The couple explained that she had a strict schedule of several medications which had to be taken at specific times, and described the timing of the medications. They found out that one of the medications was not on the formulary, and the hospital couldn't provide it. Additionally, the nurse informed them that, because of staffing, it would be difficult to maintain such a strict administration schedule.


Commentary: These are common problems encountered in the hospital. Often, PD medication schedules may be changed to match that of other required medications (such as antibiotics) or to better accommodate a nursing schedule. This is often because nurses have to take care of many patients, and making medication times similar between patients allows for more efficient administration. There is also often a one hour window before and after a scheduled timing of medication that is allowed in hospitals. This flexibility is there just in case there is an emergency that the nurse or hospital staff has to address. Finally, hospitals may not stock your brand of medications. All of these changes may result in greater risk for wearing off for the PD patient. If you need a strict administration schedule or if you need your own brand of medication, some hospitals may allow you to keep your own medications at the bedside as long as it is drawn exactly from what was written on the bottle.

 

Anxious about the whole process, Mr. and Mrs. X asked if it would be allowable for her to keep her own medications at the bedside. This was not allowed. Again, they stressed that Mrs. X had to take her medications precisely, explaining the anxiety this caused and the consequences of on-off symptoms.

The nurse called in her supervisor, who said she understood what they were saying, "but the rules won't allow for us to deliver your medications as precisely as you want." However, she did call in the Pharmacy supervisor. Again, Mr. & Mrs. X discussed the dilemma.

After some discussion, the staff nurse made a suggestion that solved the problem. Mrs. X's medications would be brought in and stored by the staff. The nursing staff brought Mrs. X each dose one hour before the medications were due. Mrs. X could see the medications and this allayed any anxiety she had. She took her medications at the precise time she needed them, with help from her husband if necessary, and informed nurse when she had taken the pills.

This strategy gave both the X's and the hospital staff a zone of comfort. Mr. X concluded that any person with PD admitted to a hospital needs another person to advocate for him/her and who understands the fear of being without timely medications.


Commentary: Although the hospital would not let Mrs. X keep her own medications at the bedside, she did not give up and continued to try and find a solution that would work for her and the hospital staff. The lesson here is Hard work now = Less work later. The person with PD knows when medications wear out and often becomes compulsive about taking medication. Hospital staff, on the other hand, do not realize that many people with PD fear that they will never get out of the "off" time. Putting in the effort initially to educate staff and get what you want (Hard work now) will result in a less anxious stay with little off time (Less work later). Convince nurses that giving medications to you on a strict schedule (Hard work now for them) will result in fewer calls for assistance because of immobility or anxiety later (Less work later for them). Persevere and find a compromise. This allows everyone to win. Try to apply the Hard work now = Less work later principle the next time you need to be hospitalized and hopefully you too will have a successful outcome.

 

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By: Kelvin L. Chou, M.D., Michael S.Okun, M.D., Hubert H. Fernandez, M.D., Diane Breslow, MSW, LCSW, Joseph H. Friedman, M.D.

Most people with Parkinson's disease will need to be hospitalized at some time. Hospitalization can be stressful for various reasons. The neurologist who takes care of you and manages your Parkinson's disease medications may not have privileges at the hospital where you are admitted. The hospital physicians and nursing staff may not know a lot about PD. If you undergo surgery or other invasive medical procedures, you may not be able to take any medications until the surgery or procedure is complete.

It is important for the patient and the caregiver to plan and anticipate what is likely to happen. This article will answer five of the most frequently asked questions about hospitalization for people with Parkinson's disease.

1) When I am in the hospital, why don't I always get my medications on time?

Hospitals and hospital pharmacies have their own dosing schedules. A medication written for "TID (three times a day)" may be given at 7 AM - 3 PM - 11 PM or some other standard schedule. Many hospitals may have a policy that permits nurses to give medications at times different (generally, one hour before or after) from the scheduled time. This policy is a practical compromise because nursing staffs are busy and each nurse cares for multiple patients. Such a policy provides nurses time to complete their scheduled duties and allows flexibility in case of emergencies on the ward. As a result, it may seem that patients with Parkinson's disease receive their medications at random times.

How can such a situation be remedied? First, make sure that the drug schedule, with specific times, is written into the doctor's orders. Check that the physician knows when it should be given. Bring with you the complete list of your medications with the correct dosage. Talk with your nurse about the importance of receiving your medications on time. Explain that, without the medications, you can be immobile or uncomfortable and that the medications allow you to move around independently. You may know more about Parkinson disease than the doctor and the staff, so it is your responsibility to help them understand your situation. While you will still need to be somewhat flexible, sharing your knowledge can alleviate many problems. The staff wants patients to be well cared for during their stay.

2) Why can't I take my own medications in the hospital? Why do they substitute some medications for me?

The nursing staff must have control of your medications. This is a safety issue and is standard hospital policy.

Some patients may be taking medications that are not stocked in that hospital's pharmacy. In such situations, the hospital physician may have to prescribe substitute medications. If you want to take your own medications, bring them from home in their original bottles and give them to the nurses, who will dispense your medications. In some hospitals and outpatient surgical facilities, the doctor can write an order for patients to take their own medicines under supervision.

3) My mother has Parkinson's disease and was recently hospitalized. However, she seems to be moving much worse in the hospital than at home. Why is that?

Several explanations are possible. When patients with PD are hospitalized with an infection of some kind, whether it is the common cold, pneumonia, or a urinary tract infection, they often feel their PD symptoms are worse. Increased tremor or more difficulty walking may be noted. When the infection is treated, their symptoms generally improve.

Patients with PD who have an infection can experience more difficulty with swallowing, so that food goes down into the lungs, causing an "aspiration pneumonia," which may further impair swallowing ability. A speech pathology consultation can be useful to formally assess swallowing and make dietary recommendations. Additionally, a respiratory therapist consultation for "chest PT" may help patients mobilize the sputum and make it easier to cough.

Another possible cause of worsening symptoms is the addition of new medications. Common offenders include certain antipsychotic drugs or antinausea drugs commonly prescribed in hospital settings. Other medication may be substituted.

All patients with PD should be as active as possible in hospital. Moving around not only tones muscle, it allows faster recovery and prevents decomposition of the skin from staying in one position for too long. You may have no choice if your doctor orders you to bed rest; then, physical therapy should be ordered. Some patients may also need rehabilitation at a rehabilitation hospital or a nursing facility before being discharged home.

4) My husband has Parkinson's disease and became confused in the hospital last time he was there. How can I prevent this?

Any infection in a patient with PD can tip a patient "over the edge" mentally, or adversely affect motor function. New medications, especially for pain, frequently result in disorientation and memory problems. Lack of sleep, IV machine alarms and hallway lights can also contribute to a confusional state. Nurses regularly enter the room overnight to take vital signs, give medications, or check on a patient. For some, especially the elderly with intermittent confusion at home, being in a different and unfamiliar environment may tip them into a delirious state. The combined effects of anesthesia and medications to treat incision pain following surgery also can cause confusion.

Confusion often disappears once the underlying cause is treated, whether it is the infection or problems with medications. Frequent reassurance, support and comfort may be all that is needed. Confusion can sometimes lead to aggression, refusal to take pills, hallucinations or delusions. Physical restraints may be necessary to prevent self-injury. Some hospitals have bed or wheelchair alarms to alert nurses when patients wander; other facilities may use a sitter. If there are psychotic symptoms such as visual hallucinations, clozapine (Clozaril) and quetiapine (Seroquel) are the only antipsychotics to be used for most patients with PD.

In very severe cases of confusion with hallucinations and behavioral changes, physicians may temporarily discontinue dopamine agonists, MAO inhibitors, amantadine, benzodiazepines and pain medications. Treatment with carbidopa/levodopa and either clozapine or quetiapine will usually result in improvement. Later, patients may slowly be titrated back onto previous doses.

5) I had deep brain stimulators (DBS) placed two years ago. I now need to have knee replacement surgery. Will the doctors know how to take care of me?

Many medical professionals and hospitals still may not be familiar with this treatment. There are a few things you and your doctors should be aware of. First, if you have had DBS surgery, you can only get a MRI of the brain, and it must be done with something called a head-receive coil. You cannot get a MRI of any other part of the body, because the DBS device can become heated and damage the brain tissue during MRI. Radiologists performing a brain MRI can learn of certain precautions from the FDA. Additionally, your stimulator's voltage should be turned down to 0 before the MRI. Only a programmer experienced with MRI should supervise the procedure.

An electrocardiogram (EKG) may be important if you happen to have cardiac problems before, during or after surgery. But the stimulators may interfere with the EKG. Bring your portable Medtronic Access Device or Access Review Device (or a magnet that comes with the device) to turn off your stimulator in the hospital. Know how to turn your stimulators on and off before going to the hospital, or having any type of surgery. Similarly, if you need a brain wave test - an electroencephalogram (EEG) - or will simply be monitored during an inpatient or outpatient procedure, know how to turn that device off.

Most anesthetics are safe for individuals who've had DBS. However, some precautions need to be taken when using electrocautery, which stops bleeding during surgery and could potentially reset your stimulator to its factory settings. Only bipolar electrocautery is recommended (with grounding placed below the level of the device). If your neurologist is on staff at the hospital where you are getting surgery, ask him or her to confirm that your stimulator is on and that the correct settings are reset following surgery. Otherwise, schedule a follow-up appointment with your neurologist to recheck your settings soon after discharge from the hospital.

The above tips and scenarios should help aid minimize problems for patients with PD who are hospitalized. Some symptoms do worsen following general or local anesthesia. There are patients who have reported feeling as if they never return to their baseline. Generally, local anesthesia is thought to be safer than general anesthesia. If you have problems with thinking and memory, have them evaluated prior to surgery as they may deteriorate.

Finally, it is important to discuss with close family members what you would like done in case of a life-threatening emergency. They and the medical staff should know your medical wishes. You should choose an advocate who can ask questions and act as your spokesperson. If you have a living will or a durable health care power of attorney, those documents should be brought to the hospital and placed in the medical chart.

The checklists below are useful tools to take with you to the hospital: one for you and one for your doctor/nurse.You can assist them with lessening some of the stress of your hospital stay; this, in turn, can help other patients with PD later on.

 

Information Checklist for Hospital Stays

General Points to be Aware of When Entering the Hospital

  • Provide a list of your medications with exact times, frequencies and dosages. Share your knowledge about PD, including on-off fluctuations and the importance of taking medications at specific time intervals.
  • Bring medication in original bottles.
  • Know which drugs can worsen the symptoms of PD
  • Research study participants should provide information about experimental drugs. Inform the study coordinators that you are in the hospital.
  • Speak up when medications are wearing off.
  • Do not take medication on your own. Unless you have prearranged permission, the staff should administer all medication.
  • Tell the staff if you have a (DBS) implant. Bring the access review or magnet device to turn the stimulator on and off.
  • Inform your neurologist that you are in the hospital. Provide your neurologist's phone number of your neurologist to your hospital doctor.
  • Be mobile, especially during prolonged stays! Walk around as much as possible. Inquire about physical therapy or occupational therapy.

If you have difficulty swallowing:

  • Sit up while eating.
  • Ask for a speech-swallowing therapist.
  • Alert staff that your medications may need to be crushed and administered through a tube. Make sure medications are administered one hour prior to meals or feedings, especially if medications are crushed.
  • There is a dissolvable form of carbidopa/levodopa called Parcopa® that can be given by placing on the tongue.

Factors that may make your symptoms worse:

  • Failure to get medications at specific times and coordinated with meals.
  • Certain dopamine blocking drugs can worsen symptoms. If absolutely necessary because of hallucinations or behavior, only quetiapine (Seroquel) or clozapine (Clozaril) should be used.
  • Anxiety, stress, and sleep deprivation
  • Urinary tract, lung, or other infections (and antibiotics)
  • Provide Advance Directives: Power of attorney for health care and living will. Choose an advocate who can ask questions and act as your spokesperson. Make sure this person is aware of your medical wishes so he or she can assist in speaking for you if needed.

 

Information Checklist for Your Nurse and Doctor When You Enter the Hospital

 

  • Name of your Parkinson's disease (PD) neurologist.
  • Phone Number of your PD neurologist.

The following are some suggestions to make the hospitalization of this person with PD smoother:

  • Parkinson's disease medications often need to be given at specific times of the day. When writing medications in the orders, please use specific times (e.g. 8AM, 11AM, etc.).
  • Patients with PD should resume medications immediately following procedures, unless vomiting or severely incapacitated.
  • If there is confusion, consider urinary or lung infections.  Also, pain medications or benzodiazepines may be potential causes.

 

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Excerpts reprinted with permission from the APDA Saint Louis Parkinson Newsletter, #1, 2006

The first-ever World Parkinson Congress (WPC, February 22-26, 2006) provided a unique international forum for sharing the latest scientific findings, medical practices and caregiver initiatives related to Parkinson's disease (PD). There were over 3000 participants who filled the new Washington D.C. Convention Center each day for this historic event. By bringing together Parkinson's researchers, health professionals, patients and caregivers, and some of the world's leading neuroscientists, a multi-layered dialogue was sparked between participants contributing their collective knowledge of PD.

Parallel sessions were divided into: a) Science sessions focusing on specific cutting-edge research; b) community sessions focusing on care delivery and quality of life topics; c) interactive sessions focusing on multidisciplinary approaches to care, advocacy and public policy issues. Each day was divided into a theme with an emphasis on how can knowledge be used to improve care delivery. Themes included: What causes PD?; How do brain cells lose their vitality in PD?; How can PD be identified before clinical onset? The final day was devoted to the needs of PD patients and families be met in relieving symptoms, improving quality of life and slowing progression.

Highlights for the Community and Integrative Sessions

Contributed by Deborah Dahlin Guyer, Speech and Language Pathologist

I tended to gravitate to the community sessions and interactive workshops. Here are some of the items that "stuck in my mind."

• A diminished sense of smell can be a precursor to PD.

• Gait problems arising from dysfunction of axial (midline) muscles and cognitive impairment are more likely to cause complications (morbidity) for patients with PD. These features are more common in older-onset patients and do not appear to be related to the overall duration of the illness.

• Non-motor features of PD include cognitive issues, visual hallucinations and depressed mood. These are under-reported, under-recognized (75% miss the diagnosis) and under- treated (94% not treated), yet they have a significant impact on the quality of life.

• Non-motor symptoms that are resistant to L-dopa can include cognitive decline, dementia, hallucinations, depression, choking, urinary incontinence, and hypotension. All add to the burden of disability.

• Apathy develops in 16-42% of persons with PD and contributes significantly to caregiver burden. This apathy is not just a simple reaction to disability. Its features include reduced emotion, diminished motivation, lack of initiative, difficulty sustaining activity, a seeming lack of concern and indifference. These individuals may stop reading the newspaper, no longer take part in family conversations, have difficulty articulating thoughts and prefer to sit around the house and take frequent naps. Apathy often co-exists with depression but can occur independently. Apathy is difficulty to differentiate from depression, but it is important to do so in terms of treatment. Apathy does not correlate with dementia. It is associated with impaired executive function (planning). It can co-exist with anxiety. It also fluctuates with motor function. Apathy is diminished when medication is working.

• Many PD patients suffer mild cognitive impairment, but this often does not clearly interfere with activities of daily living. Cognitive impairment increases with disease duration and in later stages. Current anti-PD medications have little effect on cognitive function. Rivastigmine (Exelon) may help mild cognitive impairment.

• Dementia occurs in 20-40% of PD patients. Associated features include visual hallucinations, confusion and daytime somnolence. The risk factor grows as the patient ages.

• Exercise promotes brain changes and is a legitimate therapeutic option. It slows the progression of the disease. It is a physiological tool to promote neuroplasticity. Use it or lose it! Use it and improve it! The BIG and LOUD approach combines physical exercise and speech exercises with great results and is being researched as a viable option for therapy.

• We must treat the patient, NOT the disease (patient-centered care vs. disease-centered model). One size does not fit all!

• An interdisciplinary team approach is needed. Interdisciplinary care favors quality of life issues. It is patient-centered and deals with symptom management, activity and functional improvement, education, patient and clinician adherence, awareness, prevention and risk reduction. Caregiver, community, society and the patient all take an active role. A wellness focus is not the same as focus on the disease.

Scientific Program Highlights

Contributed by: Dr. John L. Goudreau

The contributions of environmental and genetic causative factors in PD were vigorously discussed. While epidemiological studies on large populations cannot prove a cause-effect relationship, some occupations increase the risk of developing PD (e.g., farmers, teachers and health care workers), perhaps because and environmental exposure. Cigarette smoking and increased caffeine consumption has inverse associations with the developing PD; i.e., both significantly reduce the risk of developing PD. Genetic studies have identified 12 genes that are clearly involved with the development of familial PD. Both environmental factors make an important contributions to the cause of PD, aptly captured by the phrase "Genetics load the gun but environment pulls the trigger."

Some of the difficulty in identifying causes of PD stems from how one defines the disease; i.e., by brain pathology or by responsiveness to dopaminergic medication. Accuracy of the clinical diagnosis of PD was reviewed: about 10% of rigorously classified PD are not found to be PD when examined pathologically. When pathological diagnosis is used, about 6% of autopsy proven cases of PD have atypical symptoms. Up to 5% of patients in a movement disorders subspecialty clinic are incorrectly classified. There may be clinical subtypes of PD that include a tremor-dominant, postural instability gait difficulty (PIGD), akinetic/rigid and mixed forms of PD. The etiology, pathology and evolution of these subtypes may be distinct.

"Evil proteins and their mischief " were explored as underlying features of PD pathogenesis. Modifications in a-synuclein that promote protein aggregation contribute to disease pathogenesis and are targets for neuroprotective therapies. A new protein, LRRK 2 or dardarin, has been identified through genetic studies and may explain a significant portion of cases as inherited PD. The function of this protein is currently unknown, but discovering the normal and pathological function of LRRK-2 has great promise for providing new targets for PD therapies. Inflammation following initial injury appears to be an important mechanism in sustaining neurodegeneration in PD and anti-inflammatory medications can slow this process. Finally, proteosomal proteins involved in removing "mischievous" proteins may be dysfunctional in PD and this pathway also provides a compelling target for therapy development.

Neuroimaging studies are being refined for use as biomarker of PD and progression. For example, "PD related pattern" of changes on PET scanning may provide a method for confirming the diagnosis of PD and following the course of the disease, both essential to accelerate the development of new therapies. Neuroimaging may be effectively combined with other approaches such as smell testing to identify early PD. A "bionomics" approach to identifying important core biochemical features of PD was proposed that included a global evaluation of all genes and how they are translated into cell proteins in patients with Parkinson disease. Cutting edge tools are rapidly being developed to accomplish this goal.

Advanced approaches to patient care were reviewed. While dopaminergic treatments liberate patients from the grasp of rigidity and bradykinesia, they can cause involuntary movements (dyskinesias) and fluctuating responses to dopaminergic medications (short duration reponses). Dyskinesias developed in 13%, 35-40% and 100% of patients having PD for 0-5, 6-9 and >10 yrs, respectively. The frequency of dyskinesias may be declining as treatment strategies have changed over the last decade and dyskinesias appear to have little impact on quality of life. The classification and treatment of dyskinesias were reviewed; they all may be a form of stereotypic movement. Adjustments in dopaminergic drugs and amantadine are the current treatments; sarizotan and NR2b glutamate and A2A adenosine blockers are future treatments being developed. New treatments under development by pharmaceutical companies are: sublingual selegiline, new MAO-B inhibitors (rasagiline), istradephylline and other adenosine blockers, dopamine agonist patch (rotigitine). Cutting-edge therapies on the horizon were discussed including: manipulating synuclein expression, modification or removal; gene therapies to deliver or nerve growth factors enzymes that produce dopamine or GABA; transplanting stem cells or encapsulated cells producing growth factors. Early clinical (Phase I) studies are beginning with some of these new and exciting approaches and provide a ray of hope for those living with PD. A unique component of the WPC was the emphasis on Creativity. The following is an excerpt from the newly developed website,wwwcreativity.pdf.org, where you can also view the web gallery, featuring works displayed during the Congress. A Committee has been created to further study the phenomenon that many people with PD develop creative abilities. Many people living with Parkinson's disease have found ways to rise above its impact to produce truly beautiful works of art, including visual arts, music, writing, drama, dance, craft, and web design. The therapeutic value of creativity was evident throughout the program. A component of the WPC, Creativity & Parkinson's - an exhibition of artwork made solely by people diagnosed with Parkinson's - provided a rich, comprehensive and inspirational message to the participants and gave tangible evidence that creativity can have an impact on one's quality of life. "The impact of the artwork and the artists' statements will hopefully fuel further study on the creative process and the therapeutic value of creativity."

 

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By: David Bartczak, Member, MPF Board of Directors, Michigan Parkinson Foundation and Support Group Facilitator, Royal Oak Support Group; with Dr. Kelvin Chou, MD, Member MPF Professional Advisory Board and Assistant Professor, University of Michigan Medical Center and Richard Trosch, MD, Member, MPF Professional Advisory Board, and Director, Parkinson's and Movement Disorders Center, Southfield, MI

Deep Brain Stimulation (DBS) is not a cure, but rather an option to be considered when conventional pharmaceutical approaches no longer provide the quality of life the patient desires. Often, a patient is referred for DBS because he experiences wearing-off or dyskinesias that cannot be controlled with further medication adjustments. Patients with severe tremor may also qualify for DBS. Unfortunately, not every Parkinson's patient is a suitable candidate for DBS.

Many DBS centers employ a team approach, in which a movement disorders neurologist, a neurosurgeon and other staff screen potential patients in order to select candidates most likely to benefit from the surgery. The purpose of this article is to inform you of the evaluation criteria for a DBS candidate. The main criteria can be broken down into the four "D"s.

Diagnosis: The patient must have a diagnosis of Parkinson 's Disease. Many other neurological disorders may mimic the symptoms of PD, including Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP) and Dementia with Lewy bodies (DLB). Some physicians will also use the term "parkinsonism" when they are unsure if a patient truly has PD. The diagnosis is important because patients with these other disorders do not benefit from DBS. An essential part of the DBS evaluation is a consultation with a neurologist specializing in PD to ensure the correct diagnosis.

Dopaminergic response: Patients should respond to dopaminergic medications. PD patients initially show a stable response to medications in the first few years of the disease. However, as their disease severity progresses, the medication's benefit duration may shorten and the Parkinson's symptoms return before the time for the next dose. This phenomenon, called wearing-off, can sometimes be corrected with medication adjustments. Patients may also develop dyskinesias over time. These involuntary, fidgety-type body movements can be severe. When patients begin to experience disabling wearing-off or dyskinesias not correctable with changes to medication, it is time to consider DBS. It is important to remember that, in general, DBS only makes patients as good as their best medication "on" state, but it also helps decrease the severity of the "off" times, allowing patients to feel as if they are "on" throughout the day. The exception to this rule is tremor. Parkinsonian tremor can be treated with DBS even if it does not respond to medications. Some DBS centers may test dopaminergic response with an off-on evaluation, in which patients are examined 12 hours after stopping their PD medication and then an hour or two after taking it. To be a suitable candidate for DBS surgery, a patient should have at least a 30-point improvement between the non-medicated/"off" state and the medicated /"on" state on a Parkinson's disease rating scale score.

No Dementia: Patients who have evidence of dementia or significant problems with thinking and memory are not candidates for DBS. That is because patients with significant cognitive problems may have difficulty fully understanding all the risks and benefits of surgery. There are cases in the medical literature where patients with borderline dementia progress to full-blown dementia after DBS surgery. As a result, part of the DBS evaluation may include neuropsychological testing to be certain that patients do not have severe problems in this area.

No uncontrolled Depression: Some patients have been reported to be suicidal after DBS surgery for PD. While it is not exactly clear why this happens, it is reasonable to make sure patients do not have significant depression before undergoing surgery.

Other factors that may impact whether someone is offered surgery include age and medical history. While there is no absolute cutoff for age, younger patients tend to do better. The preferred age is younger than 70, since the surgery and recovery times become longer for more elderly patients, but many DBS centers have operated on patients older than 70 with good results. Multiple medical problems may also make the surgery more challenging. For example, a history of brittle diabetes can affect healing of the incisions. Presence of a pacemaker may also make the surgery more difficult, because MRI is often used to visualize the area where the electrode will be placed. These are issues to discussed with the neurologist and neurosurgeon during the evaluation process.

Selection of the proper candidates is one of the keys to success for DBS surgery. However, a patient's expectations must also be realistic for the surgery to be successful. DBS will only be as good as the best medicated state prior to surgery. PD symptoms that do not respond to medications, such as gait or balance, also will not benefit from DBS. DBS can be a life-changing procedure, but only for the right patients.

 

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by Dr. John Goudreau, DO, Ph.D.,

Are you considering traveling overseas for a medical procedure to treat Parkinson Disease (PD)? Medical tourism for "restorative" stem cell therapy to treat PD is the rapidly growing practice of traveling across international borders for health care. More than 50 countries identify medical tourism as a national industry.

Medical tourism is marketed by dozens of private for-profit clinics from Guatemala to China, mainly through internet and patient-to-patient communications. These companies claim to help patients with a variety of illnesses, especially incurable conditions such as PD, while offering little or no scientific evidence.

For decades, doctors have been using adult stem cells from blood, bone marrow and umbilical cord blood to treat cancers of the blood like leukemia and lymphoma. Unlike mature nerve cells, stem cells can replicate, making them potentially powerful weapons against many neurological diseases, including PD. Adult stem cells can be harvested from numerous sources - including one's own bone marrow or from umbilical cord blood. Subsets of cells collected this way are considered "pluripotent" - the cells can mature into any type of cell in the body. Once multiplied and conditioned, the pluripotent stem cells can be injected into the blood stream, spinal fluid via a lumbar puncture, or directly into the brain. Adult stem-cell treatments, often arranged by American-based intermediaries, run between $10,000 and $35,000, depending on the treatment (other travel costs are extra).

Adult stem cell therapy for PD carries a significant risk of complications. Pluripotent stem cells can form cancerous tumors. Stem cells harvested from other people can carry infectious disease and usually require anti-rejection medications for the foreign cells to survive. The only published series on patients receiving adult stem cell therapy for spinal cord injury in China showed a majority of patients suffered complications, while none appeared to benefit. Finally, the pursuit of unproven alternative therapies abroad can be an obstacle for the use of proven effective therapies or clinical trials available in the United States.

Medical tourism for stem cell therapy is often a journey of hope for people struggling with the accumulating ravages of PD. The proper way of establishing that a new treatment is safe and effective through the Food and Drug Administration (FDA) may seem to slow for some. People hope the pluripotent stem cells, like magic bullets, will provide immediate benefit by finding their way to correct targets and developing into the appropriate cell types to repair PD-damaged brain regions.

Medical tourists for stem cell therapy often claim some success when they return home. Peer-reviewed documentation of these claims is conspicuously absent. While there may indeed be a therapeutic benefit to peripherally delivered stem cells in PD, anectdotal statements of improvement are no substitute for clinical proof of effectiveness. Some reports of improvement may be a placebo response, or a desire to believe that the money spent had to have been effective.

Stem cell clinic Web sites and brochures highlight stories of success, often including scientific articles from animal studies to give the appearance of effective treatments. They over-promise their treatments' benefits, while grossly downplaying or ignoring risks. Some sites even cite the few clinical trials using fetal brain cell transplants, instead of the adult stem cell therapy they actually are offering.

Not surprisingly, "magic cure by stem cell" medical tourism has been criticized for consumer fraud, blatant lack of scientific justification and disregard for patient safety. There is potential physical, psychological and financial harm to patients, as well as the general lack of scientific transparency and professional accountability of those profiting from these clinics. If patients undergoing unproven and unregulated stem cell therapies abroad develop serious complications, then the progress of legitimate clinical research could be undermined.

Let's not demonize all innovative stem cell therapeutic approaches, including those delivered outside the United States. PD patients have legitimate and ethical motivation to pursue all avenues of treatment available, particularly given the shortcomings of current proven therapies in some cases. Nevertheless, there is a clear distinction between the commercial purveyance of unproven interventions and legitimate attempts at medical innovation outside of traditional medical research. While medical breakthroughs have evolved from medical innovation, novel medical approaches to treatment must undergo rigorous scientific and ethical review, as well as have appropriate measures for patient protection.

Fortunately, there are steps to avoid falling into a medical "tourist trap." Here are a few examples of key questions and potential "red flags." This list is not comprehensive and additional information, including what to ask before agreeing to undergo an unproven therapy, can also be found at the International Society for Stem Cell Research Web site: www.isscr.org/clinical_trans/pdfs/ISSCRPatientHandbook.pdf.

Some key questions to ask about unproven therapies being offered abroad

Have pre-clinical studies been published, peer-reviewed and repeated by other experts?
Do the providers have independent committee approval, e.g., Institutional or Ethics Review Board, to ensure risks are as low and worth any potential benefits, and that patient rights are being protected?
Do the providers have approval for the safe conduct of clinical trials or medical use of a product for PD from a national or regional regulatory agency, e.g., FDA or the European Medicines Agency?
What are the alternative treatment options for my condition?
If I have this treatment, can I participate in otherclinical trials or have other interventional treatment options?
What compensation am I entitled to if I am injured as a result of participating in this therapy?
What are the total costs of the treatment and what does this include?
What would be the costs of emergency treatment, if needed, should a complication arise?

Red Flags raising concerns about a medical tourism facility

Claims of efficacy only based on patient testimonials
Claims of multiple diseases being treated with the same type of stem cell
Unclear documentation of the source of the cells or how the treatment will be done
Claims of little or no risk
High cost of treatment or hidden costs
Suggestions that repeat treatments may be needed if not initially successful

 

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Dr. Paul Cullis, MD, is Section Chief of Neurology at St. John Hospital
and Medical Center in Detroit, MI, and Clinical Associate Professor of Neurology at Wayne State University School of Medicine in Detroit, MI. He is a neurologist with special training
and expertise in movement disorders, such as dystonia and Parkinson's disease. Dr. Cullis is the Vice Chairman of the MPF Board of Directors, a Member and past Chairman of its Professional Advisory Board.

Dopamine agonists directly stimulate the receptors on nerves in the brain that would normally react to dopamine, the chemical that is deficient in the brains of patients with Parkinson's disease (PD). Unlike levodopa (SinemetR), a dopamine agonist is not converted to dopamine in the body, but it acts like dopamine directly. Dopamine agonists may be used alone in mild to moderate PD (Stages I-III/V on the Hohn and Yahr Scale) to effectively reduce symptoms.

This approach is often effective in people recently diagnosed with PD, especially those younger than 70. It can delay the need for levodopa, thereby postponing the motor fluctuations that may occur with long-term levodopa therapy. A dopamine agonist can be added to treatment with levodopa in the later stages of PD, when levodopa alone may no longer adequately control symptoms, when increasing the dose to provide adequate control of symptoms would cause excessive side effects, or when motor fluctuations occur.

The first-generation dopamine agonists were chemically related to ergotamine, which produces St. Anthony's Fire, a dreaded illness common in the Middle Ages. Its cause was poisoning from a fungus (ergot), which grew on rye grass and contaminated rye flour used in making bread. It resulted in severe burning of arms and legs. This similarity gave these first-generation agonists, bromocriptine (ParlodelR) and pergolide (PermaxR), significant adverse effects. In March 2007, the U.S. Food and Drug Administration (FDA) announced that the makers of PermaxR had agreed to stop selling it because of serious side effects, such as damage to heart valves. ParlodelR is still on the market, but isn't often used to treat PD.

The second-generation dopamine agonists have a chemical structure distinct from ergotamine: therefore, they lack some of its side effects. Ropinirole (RequipR) and pramipexole (MirapexR) are used increasingly as initial therapy in people with newly diagnosed PD, especially those younger than 70, in order to delay treatment with levodopa and forestall its attendant side effects. They can provide effective treatment for many patients without the addition of levodopa. A patch containing rotigotine (NeuproR), another second-generation agonist, was available recently for a short time in the U.S. Because it produces a steady level of the medication, its delivery method was attractive in the blood. Unfortunately, the manufacturer withdrew the drug because of problems with the patches. The drug may be on the market again, some time in the future.

It is believed that abnormal, pulsatile stimulation of dopamine receptors in the brain may be responsible for motor fluctuations in PD. This concept was suggested by work in primates by Peter Jenner in London. The PD brain becomes unable to smoothly regulate production of dopamine from levodopa. Therefore, administering levodopa or short-acting agonists may be harmful in the long term. Theoretically, smooth, continuous stimulation of dopamine receptors might avoid these long-term complications.

Two developments have occurred recently. Firstly, generic ropinirole has become available, lowering the price. Secondly, a long-acting form of ropinirole (Requip XLR) has been approved by the FDA as a once-daily medication. Requip XLR provides a near-constant level of medication in the blood during the day and a lower concentration at night. This potentially may lead to a decreased risk of troubling motor fluctuations. The drug is indicated for the treatment of the signs and symptoms of idiopathic Parkinson's disease. A recent study by F. Stocchi et al. demonstrated that, at the doses reached in their study, treatment with Requip XLR was almost twice as likely to achieve a greater than or equal to 20% maintained reduction in daily awake time spent "off" as ropinirole immediate release given three times a day. Unfortunately, the sustained-release preparation may still cause excessive daytime sleepiness and increase the risk of compulsive behavior, such as gambling. These potential risks should be weighed against the benefit.

Another dopamine agonist, apomorphine (ApokynR), is available in the U.S. for use by injection. It is a rapid-acting rescue medication for occasional episodes of immobility, when muscles become frozen and the patient is unable to function. ApokynR will improve mobility until an oral medication can take effect. It should not be used on a regular basis for first-line treatment. It can produce intense nausea and vomiting when first administered.

When taken in combination with levodopa, dopamine agonists may reduce the amount of levodopa needed to control symptoms, thereby reducing some side effects. They may improve motor function during both "on" and "off" periods. They may reduce dyskinesias associated with long-term levodopa therapy, by lowering the need for levodopa. They may also reduce the wearing-off effect of levodopa.

Proper treatment for your PD can only be decided on an individual basis by your physician considering your special circumstances and co-existing illnesses. Inform your doctors of all the effects and side effects of your medications, so that they can prescribe the treatment that will be most effective in managing your disease.

 

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